Our six-month-old daughter has been in hospital all her life due to a rare bowel condition
South Shields parents are seeking help after their six-month-old daughter was diagnosed with a rare bowel condition.
Baby Blake was born to Luke Milford and Jemma Jackson, from South Shields, on January 1, but sadly she has spent the majority of her life so far in hospital.
Blake was admitted to the Royal Victoria Infirmary (RVI), in Newcastle, on January 4 and around a month later was diagnosed with Pediatric Intestinal Pseudo-Obstruction (PIPO) - a rare condition where the bowel acts as if it is blocked, but there is actually no physical blockage.
After multiple surgeries at the RVI, Blake was then transferred to Great Ormond Street Hospital, in London, in April for further treatment - where she has remained ever since.
Luke has given the Shields Gazette an insight into how his family’s life has been since Blake was born at the start of the year.
He said: “It has been a horrific six months, Blake was born on January 1, she then went back into hospital at the RVI on January 4 and we haven’t been able to take her home since.
“She underwent surgery in Newcastle but when they cut her stomach open, the problem wasn’t what they originally thought it was - in the end it took about a month for her to be diagnosed with PIPO.
“That first month was horrendous because we were constantly thinking that she was going to die because we didn’t know what was wrong, especially with her being so small.
“She had more surgeries following the diagnosis but she still wasn’t really progressing so we were transferred to Great Ormond Street - where we’ve been since April 1.”
At Great Ormond Street Hospital, only one parent is permitted to stay on the ward with their child overnight, meaning that anyone else has to stay elsewhere and unless your child is in ICU, the hospital cannot guarantee additional parents a bed.
This means that the other parent has to go to an accommodation office at the hospital each day at 9am to register for bed before being told at 4pm if they were successful or not - with the process repeating daily Monday to Friday.
Luke has explained that thanks to the family launching a Go Fund Me page, he has been able to secure an Airbnb in London until June 28, but costs are still continuing to rise.
He commented: “I never wanted to publicise what we have been going through but the financial impact that it is having on us due to accommodation issues is too much now.
“With living in the North East, I can’t just get on a train and go home at the end of the day to then be able to go back the very next day.
“We were really lucky when we first got here as Louie's Trust were able to get us accommodation for the first two months and they are still supporting us with grants, but there is obviously a limit to what they can do.
“This is why we’ve had to start the Go Fund Me and we’re grateful that more than £5,500 has been raised so far - which has helped us to secure an Airbnb for five weeks.
“However, with it coming into the summer months, the cost of accommodation is now starting to double and triple, making it all so expensive.”
With Luke being a former stand-up comedian, The Stand Comedy Club, in Newcastle city centre, have decided to hold a benefit night for Blake, on July 27, in an effort to raise money to allow the family to stay in London.
Lee Kyle is set to host the night, with Carl Hutchinson, Ben Crompton, Sammy Dobson, Alex Redman, and Si Hetherington all on the bill for the evening.
Luke added: “We’re completely blown away by the support, especially given that we are a private family and I didn’t feel great about having to publicise our problem.
“It means the world to me to see The Stand putting on a benefit night for Blake, especially as it has been about eight years since I was involved in that circuit.
“I never asked for them to do that, Lee Kyle reached out to me and asked if it would be okay to do.
“Seeing people like Carl Hutchinson, who I used to work alongside as a comic, taking time out of their schedules to help is a really overwhelming feeling.
“It means the world to me to see them support us.”
You can donate to the fundraiser by visiting: https://www.gofundme.com/f/cost-of-living-in-london.
Tickets for Benefit For Blake at The Stand are on sale now and available at: https://www.thestand.co.uk/performance/20420/benefit-for-blake/20250727/newcastle.
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